posted
I'm just floored at the moment. I was in active antibiotic treatment for about 8 months total in 2007 before developing constant headache (it has yet to go away) and unbearable tingling in my arms and hands.
During my treatment my health improved SO much, I got so much of my life back, and I was satisfied that my Lyme was beaten.
I pursued what the docs found on my MRI - a chiari malformation (my cerebellum was slumping down out of my skull by a mere 3mm). Three neurosurgeons agreed that surgery might help me.
I was scheduled for brain surgery next week, but they found a positive ana on my bloodwork and postponed the surgery for me to get to a rheumatologist.
I immediately thought "what a minute!" After googling for one minute, I found that lyme can show up on an ana because ana just shows inflamation in general.
I'm still going to have the titers run again for lupus and rheumatoid arthritis, but they've never showed up before.
Then last Thursday ALL of my old lyme symptoms showed back up in full force. I was completely shocked and scared, then I realized I had just finished a round of amoxicillin for a sinus infection and it all came together - I'm still herxing! I hadn't been on abx in over a year and this first time I herx like nobody's business.
I'm still in massive pain, flu-ish, achy, miserable, but I'm slowly remembering my detox routine and planning on getting back to my llmd (who is 10 hours away). He recommends restarting Lyme treatment, but I don't know what method he'll want to use this time around. Will the Lyme be more resistant?
So I'm wondering if anyone went through treatment, was decent for awhile and had a relapse similar to mine. How did your llmd proceed - did they just restart their oral abx protocol?
I just want to know I'm not the only one who thought their lyme was gone for good only to be slammed with the reality that I have to follow this road all over again.
Any tips for detoxing are appreciated, too, since I'm struggling to remember anything these last few days!
Thanks in advance! Sarah
Posts: 91 | From East TN | Registered: Mar 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm sorry to hear this. Just wanted to note that I believe the disease you mentioned can cause many symptoms you're describing (could be mistaken for Lyme). Pressure on the spinal cord is dangerous.
Having a reaction to Amoxicillin certainly seems suspicious of Lyme though.
I wish you luck and hope you get back to good health.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
My daughter relapsed after 1 month of stopping antibiotics even though she was on "all" the herbal protocols and supplements supposed to be effective for lyme. She was back to 95% health at the time we stopped. Running, laughing socializing, fully functioning with very few symptoms. By the end of the first month her syptoms returned very differently than her original ones. WE re-started all her original meds, and her llmd has determined that babesia was lying dormant and undertreated even with 7 months of mepron, zith, artemisinan. We have started a new protocol to treat this, while still addressing lyme and bartonella. She has only tested positive for lyme, and ebv virus. She has all clinical symptoms of babesia and bartonella. She was sick for 10 months before we started treatment for lyme. Hope this helps unravel the puzzle of your suffering somehow. SEems everyones journey is so different and yet so similar. Take care
Posts: 75 | From San Diego, CA | Registered: Feb 2007
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posted
Thanks! Trust me, I know all the ins and outs of chiari, after a year+ of seeing all these docs all over the country for it. They all said my herniation was tiny, minimal, that I have no measurable increased intracranial pressure, no visible flow reduction on cine mri, etc. They basically shrugged and said surgery might help. It was totally optional, optional brain surgery (it sounds insane now that I type it).
I'm not saying I won't someday have to revisit that diagnosis if I progress, but with this herx, I feel like this could have all been lyme all along.
I can't even describe how hard a time I'm having with all of this. I'm heartbroken, even if it means no brain surgery. At least that was a quick possible fix, instead of a long, long road of herxing and detoxing and no end in sight.
I guess though, I would rather go through lyme treatment than brain surgery lol.
~ Sarah
Posts: 91 | From East TN | Registered: Mar 2007
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